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Joelle | Colchicine, Diet | 3 months ago | Originally written in English No Colchicine, No GLUTEN, No FMF Attacks. - This message was original posted by Jsapriel on Feb.9, 2011.
57 years old, two known FMF Gene mutations, I have been off Colchicine for the past 10 to 12 years. Since I stopped eating GLUTEN, I have one to one and half mild to very mild FMF attacks per year. FYI: I am in better physical shape than my two twenty something years old sons.
I was born in 1953 in Morocco. I am now 57. I grew up and lived near and around Strasbourg, in the Northeast of France until 1984 which is when I moved to the United States. Both my parents are Sephardic Jews. My mother was born in Morocco from a family with a long presence in Morocco and my father was born in Egypt. Some genealogical research I did showed that my father’s family actually originated from present day Algeria.
I was diagnosed with FMF for the first time at the age of one. As a toddler shortly after my initial FMF flares, while still living in Morocco, I had exploratory abdominal surgery that resulted in the removal of my appendix. I was re-diagnosed 4 or 5 times after the initial diagnosis. One of the subsequent re-diagnosis occurred while I was drafted in the French military. The FMF diagnosis enabled me to be discharged for medical reasons from the French military.
Characteristics of my FMF flares:
From 1 to 16 years of age: about 10 FMF flares/year. Typical symptoms included: severe cramps, vomiting, high fever, diarrhea, minor articulation pains and pleurisy. The worse part of the FMF flare would last 3 days. Total recovery would occur over a week. I would typically be out of school for one to three days. My typical diet during a flare would be fasting with just tea and/or bouillon for food.
From about 17-18 years old to the year 2001, I typically would have between 4 to 6 flares/year. Typical symptoms included: severe cramps, no vomiting, high fever, diarrhea, minor articulation pains, pleurisy.
By the time I reached my teenage years, I had developed a constant monitoring system that would check the state of my digestive track for the slightest early signs of an FMF Flare. As soon as I would detect an early FMF symptom, I immediately radically change my behavior and my diet to get ready for the flare. From the time I reached college, I made consistent efforts to be physically active. Today, by most measurements, I am in better shape than most healthy males in my age group and often in better shape than males much younger than I am.
In 1976, while on an internship in Germany, I met a Russian doctor who had worked at Hadassah Hospital in Jerusalem and who informed me that Dr. Micha Levy had successfully been using Colchicine to treat FMF. During the following 3 years, I took 0.5 mg of Colchicine daily. My episodes were still occurring; however their intensity and duration was much lessen. After a few years on colchicine, I decided to only take colchicine at the onset of an FMF flare (2 * 0.5 mg every 4 hours - 3 times in a day) to derail the flare which I usually managed to lessen using this form of treatment.
About 4 years ago, I was included in Dr. Kastner’s clinical study of FMF cases @NIH near Washington DC. The genetic testing administered by Dr. Kastner found that I have 2 out of 4 of the FMF genetic mutations he has identified.
In 2001, by pure coincidence I realized that I was Gluten sensitive. For a few months I experimented with my diet to realize that abstaining from Gluten would enable me to avoid feeling a particular kind of tiredness ("spacey") that hampered most of my afternoon hours.
For years I had spend my afternoon in a half awake/half asleep state which hampered various aspects of my life and is not a productive mental state considering that I have a very brain intensive job (I work in IT).
In 2001, shortly after I went on a gluten free diet, the intensity and frequency of my FMF Flares decreased to about 1 to 2 medium to mild flares in a year. FMF patients are typically very sensitive to stress. At the time that I went on a gluten free diet, I was divorcing and unemployed. It was probably the most stressful time of my life and my FMF flares decreased in intensity and frequency.
At the time of this writing, I had not had a full blown FMF flare in the past 2 years, not even a mild one.
However, I am not totally free of FMF symptoms: once in a while I still have very mild FMF symptoms such as mild pains in the articulations or unexplained sleeplessness.
As soon as I absorb Gluten, even small amounts of Gluten, my digestive track slows down to a crawl, I feel tired and bloated, I feel strange skin sensations, etc...
It is very obvious to me that, in my case, Gluten acts as a trigger inflammatory agent. However, for some reason, a full FMF flare does not occur until a certain threshold is reached. It looks like Gluten caused inflammation follows a cumulative pattern before manifesting itself as a full blown FMF episode.
In collaboration with Dr. Janine Jeager from the University of Virginia, we have identified 9 cases of FMF patients whose health improved when going on a Gluten free diet. I am not suggesting that the health of all FMF patients who improve if they went on a Gluten Free diet.
I am suggesting that some FMF patients could entirely free themselves of the most painful and undesirable symptoms of FMF by going on a Gluten Free diet.
I suggest that a GF diet is a worth while experiment to try for at least one to three months to determine if it has a positive impact on the FMF flares.
This message was original posted by Jsapriel on Feb 9, 2011
Thank you Jsapriel for sharing your story with others on the forum.
While many individuals suffering from FMF may have noticed a correlation between consuming certain foods and FMF attacks, these are anecdotal observations, no empirical evidence exists on this yet; it would make an interesting topic for future research… I was unable to locate any articles related to FMF or gluten written by Dr. Janine Jager (sp?).
Countless scientific research proves that colchicine is the treatment of choice for FMF sufferers and prevents FMF’s most serious complication, Amyloidosis, which can lead to renal failure.
Although these changes in your diet may have helped curb your attacks, it is advisable that any FMF sufferer considering discontinuing colchicine treatment should first consult their treating physician to discuss the associated risks.
I am unsure of your genetic diagnosis. You state ‘The genetic testing administered by Dr. Kastner found that I have 2 out of 4 of the FMF genetic mutations he has identified.’
Perhaps the excerpt below applies in your case….
Individuals who do not have the p.Met694Val mutation and who are only mildly affected (those with infrequent inflammatory attacks) should either be treated with colchicine or monitored every six months for the presence of proteinuria.
See more excerpts below from article by Dr. Mordechai Shohat of the Molecular Genetics dept, Rabin Medical Center for more information regarding managing FMF, and preventing Amyloidosis.
Excepts taken from GeneReviews- NCBI Bookshelf- Familial Mediterranean Fever
www.ncbi.nlm.nih.gov/books/NBK1227/ (for the full article)
Disease characteristics. Familial Mediterranean fever (FMF) comprises two phenotypes: type 1 and type 2. FMF type 1 is characterized by recurrent short episodes of inflammation and serositis including fever, peritonitis, synovitis, pleuritis, and, rarely, pericarditis and meningitis. The symptoms and severity vary among affected individuals, sometimes even among members of the same family. Amyloidosis, which can lead to renal failure, is the most severe complication. FMF type 2 is characterized by amyloidosis as the first clinical manifestation of FMF in an otherwise asymptomatic individual.
Management. Treatment of manifestations: treatment of febrile and inflammatory episodes with nonsteroidal anti-inflammatory drugs (NSAIDs); routine treatment of end-stage renal disease (ESRD), including live related-donor renal transplantation. Prevention of primary manifestations: lifelong treatment of homozygotes for the p.Met694Val mutation or compound heterozygotes for p.Met694Val and another disease-causing allele with colchicine (1-2 mg/day orally in adults and 0.5-1 mg/day in children according to age and weight). Colchicine prevents the inflammatory attacks and the deposition of amyloid. Individuals who do not have the p.Met694Val mutation and who are only mildly affected (those with infrequent inflammatory attacks) should either be treated with colchicine or monitored every six months for the presence of proteinuria. Surveillance: annual physical examination and urine spot test for protein for those treated with colchicine. Agents/circumstances to avoid: possible worsening of symptoms with cisplatin; possible adverse effect on renal transplant graft survival with cyclosporin A. Testing of relatives at risk: Offer molecular genetic testing to all first-degree relatives and other family members (regardless of symptoms) especially when the p.Met694Val allele is present because renal amyloidosis can be prevented with colchicine treatment.
Prevention of Primary Manifestations
Individuals who are homozygous for the mutation p.Met694Val or compound heterozygous for p.Met694Val and another disease-causing allele should be treated with colchicine as soon as the diagnosis is confirmed, as this drug prevents both the inflammatory attacks and the deposition of amyloid. Colchicine is given orally, 1-2 mg/day in adults. Children may need 0.5-1 mg/day according to age and weight. Affected individuals should receive colchicine for life.
Individuals who do not have the p.Met694Val mutation and who are only mildly affected (those with infrequent inflammatory attacks) should either be treated with colchicine or monitored every six months for the presence of proteinuria.
Continuous treatment with colchicine appears to be less indicated for individuals who are homozygous or compound heterozygous for the mutation p.Glu148Gln. Colchicine should only be given to these individuals if they develop severe inflammatory episodes and/or proteinuria as a result of amyloidosis.
Prevention of Secondary Complications
Treatment with colchicine 1 mg/day prevents renal amyloidosis even if the FMF attacks do not respond to the drug.
je vous conseille de prendre contact avec l'AFFMF www.affmf.org/ et de poser votre question nous répondrons dans notre rubrique : Les questions du mois
Cette rubrique reprend les questions posées par les internautes.
Les spécialistes : le Professeur Philippe Reinert, le Docteur Véronique Hentgen, le Docteur Katia Stankovic répondent à vos questions :
Retrouver une base documentaire au niveau des pages «Les publications téléchargeables » et «Les questions du quotidien ».
colleenjones | Finding a doctor | about 1 month ago | Originally written in English meditteranian fever
i would like to speak with anna if i could about fmf i will give you my email addy if you could contact me asap. my name is colleen jones both my daughter and i have med fever, i am 54 it didn't start with me till i was in my mid 40's my daughter nicole, is 25 and just had a bout, the worst yet which was a good 2 weeks with fevers of 105 every day going down to about 103. stayed for over 2 weeks and totally incapacitated, can you please contact us. she is on coultrachine,(misplelled) and has been for a couple of yrs.
my email is [email protected] i look forward to hearing from you, also if you know the name of any good docs please let us know, i don't care where they are.! thanks so much
Possible protracted febrile myalgia?
I don't know enough about your daughter's symptoms but has her doctor considered the possibility of protracted febrile myalgia ?
Protracted febrile myalgia is a rarer manifestation associated with FMF, it seems to occur more often in spring time when streptococcus infections are at their peak. It can involve a drawn out high fever, paralyzing muscle, pain, joint pain, abdominal pain, diarrhea, elevated heart rate, vasculitic rashes. Symptoms can last approx. 4 -6 weeks but can be shortened with corticosteroid treatment.
See article links below.
Here are some articles on protracted febrile myalgia in FMF patients.
Case Report: Uncommon clinical pattern of FMF: protracted febrile myalgia syndrome
Familial Mediterranean fever (FMF) is a genetic multisystem disorder of unknown etiology characterized by recurrent episodes of fever and pain due to acute inflammation of the peritoneum, synovia, or pleura. Up to 25% of patients with FMF report muscle pain. Myalgia may be a spontaneous pattern, exercise-induced pattern, or protracted febrile myalgia syndrome (PFMS). PFMS is characterized by severe paralyzing myalgia, high fever, abdominal pain, diarrhea, arthritis/arthralgia, and transient vasculitic rashes mimicking Henoch-Schonlein purpura. The episodes last for 4–6 weeks, except in those patients treated with corticosteroids. The PFMS may recur even under colchicine prophylaxis. We describe a 30-year-old pregnant Turkish woman with known FMF and under colchicine prophylaxis, with severe myalgia for 8 weeks, emphasizing the importance of a different clinical pattern of PFMS even in the absence of other symptoms.
NancyS | about 1 month ago | Originally written in English Colleen - some suggestions that might be of help
This is Nancy who is the moderator of the FMF boards. I have no doctors listed for Vancover. I am sorry. I am not a doctor and I can not diagnose nor prescribe. What I am suggesting to you comes from my own personal experience with FMF and that of some friends.
I would suggest that you look for a Jewish hospital or at least a Jewish congregation or temple near you and see if you could find help finding a doctor through them. They MIGHT know of a Jewish doctor who has some knowledge of the disease. You might want to contact the Jewish Centre of Vancouver to see if they can help
In the mean time you need to educate yourself to the point that you can educate any doctor on this illness if you can not find one who already knows about it. You need to be demanding enough that you can get a doctor to listen to you and offer you trials of things that you know about and that he doesn't.
HOW TO TALK TO YOUR DOCTOR ABOUT THIS
Again, let me say that I am not a doctor and I can neither diagnose nor prescribe. I am a genealogist with a scientific bent and a patient ADVOCATE. I can tell you about my illness and the way that I dealt with it. It is up to you to decide for yourself your course. First a word on HOW to present this to your own doctor.
In order for your doctor to listen to you, you must talk to him about yourself and your problems and he must listen to you. I have been told that doctors listen to the first 23 seconds of what patients say. So you must be quick and you must make a strong statement. Here is one that you can practice before a mirror or a family member that may be of some help.
Dr.______ I am a genealogist and I have been researching my family tree. I have found that I have ancestry from a fascinating group of people who have a Mediterranean ancestry. I have found what is thought to be a rare disease in BC that fits many of my symptoms through this research
(List 5 or more symptoms of FMF that you are having.) (IF you are taking colchicine and it is not helping, tell the doctor here that is so. IF you are not on colchicine then you will want to follow the rest of the script:)
I want you to consider giving me a trial course of the medicine for this illness. I have been told that the med is not harmful taken for 30 days even if I do not have the inherited illness, and I will know within that time period whether or not it will help me. I know of about several HUNDRED people with this ancestry who have tried the meds in the last few years and who are receiving help and feeling better. I also want to feel better and I know that you want me to feel better too! The medicine I want to try is called colchicine and the inherited illness is called Familial Mediterranean Fever. I need a prescription for 0.6mgs of colchicine to be taken twice a day for 30 days. If this does not help me, I will tell you and stop taking the medicine. I think it will help and I want to try it.
If your doctor laughs at you, hold up your hand in the stop position and say ‘Stop laughing. Do not laugh at me!’ I am serious about this and I want to try the medication. Hand him the document you have copied below. Each time your doctor says something there after, say “I am serious about this and I want to try colchicine.” You may also say, “I have tried every other medicine you have given me without any improvement. I want to try colchicine.” (Colchicine is pronounced Coal-chuh-seen.)
If he does not listen, you might want to consider going to another doctor. I went to three others before I found one who understood that I take the lead in my own health care; that I listen to the doctor and ask questions and then make up my own mind about what is happening to me. Although my doctor told me that he didn’t think I had this illness, he agreed to give me a trial of the med. It is working. I have not had to take an anti-inflammatory for about a year now, except for an occasional headache. My doctor and I are both pleased.
Some folks are reporting that it is easier to tell the doctor that a sibling or parent has just been diagnosed with this illness and since they had similar symptoms, they want a trial of the med too. It seems to be working since all have taken colchicine and are improving. I am not advocating this, just telling you what has been used.
I also suggest that you take someone with you, preferably a male if he will go. Doctors listen to men better than they do women and because you may be nervous, having a hubby or friend with you will help you to be more calm and collected and able to remember all the things that you wanted to talk with your doctor about. And if he has lived with you and seen your pain, he will be able to verify for the doctor that these symptoms are accurate. While I would prefer this not to be necessary, it does work for some doctors.
IF colchicine is NOT controlling the symptoms at this point, the use of CORTISONE/PREDNISONE for the relief of pain/swelling and inflammation can be given on a short term basis. My doctor gives me 30 mg tabs X 3 per day for 3 days, then lowers the dose to 20 and 10 and 5 over the next week to 2 weeks. This usually will control my immediate pain and allow the colchicine to help me heal.
I am sending you here some urls on Familial Mediterranean Fever. I would like for you to go to each one of these urls. You need to read them and be able to understand them. Print out these urls for your doctor or give him the urls. There are now over 180 mutations to genes that have been found that CAUSE FMF and there may be many more out there still left to find. This illness mimics so many things!!
Tell your doctor that while you know he may not believe Familial Mediterranean Fever is what is causing your problems and he may not KNOW anything about FMF, you HAVE the ancestry from which it is possible to inherit it and you are going to educate him so that he can help you ----
Tell him that you have cousins who have BEEN DIAGNOSED with this illness who are now healing. You are not lying. Many people in the last few years, some of them cousins to you, have taken colchicine and are now healing. The medication colchicine will NOT hurt you taken in the amount needed to control this illness according to my doctor, EVEN if you do NOT have this disease. You can tell him this from your cousin NANCY who has this illness. :-)
First I want you to go to a website where you will have to register. thelancet.com - This is the DOCTOR's JOURNAL that ALL doctors USE!!! It is FREE but in order to search you have to fill out the registration form. They want to know what field you are in. I believe there is a field called RESEARCH or something like that. FILL That one in. You are doing RESEARCH. :-) Once you get the registration screen name and password, you can search for anything medical. In the search engine put Familial Mediterranean Fever. A LOT will come up. The peice you are looking for is:
Familial Mediterranean fever
Eldad Ben-Chetrit, Micha Levy
Volume 351 Issue 9103 Page 659
Click on the TEXT connection for this peice and it will come up. PRINT the whole thing out then go back and click on those diagrams (MAP of spread of FMF and the other one showing HOW FMF works.) Enlarge those by clicking on them and print them out too
Here are some other URLS that you can go to, and print out EACH one of these as well. Staple each by itself and include it in what you are sending to the doctor.
NORD - National Organization for Rare Disorders, Inc. www.rarediseases.org/search/rdbdetail_abst...
Gale Encyclopedia of Medicine: Familial Mediterranean fever www.findarticles.com/cf_dls/g2601/0005/260...
eMedicine - Mediterranean Fever, Familial : Article by John Meyerhoff, MD www.emedicine.com/MED/topic1410.htm
QJMed -- Abstracts: Grateau et al. 93 (4): 223 qjmed.oupjournals.org/cgi/content/abstract...
Tell your doctor that you EXPECT him to educate himself so that he can HELP YOU!!
There is also a study going on in the US. I am not sure they would accept Canadian citizens, but it wouldn't hurt to try.
Familial Mediterranean Fever and Related Disorders: Genetics and Disease Characteristics
This study is currently recruiting patients. You have to pay for your transportation to Bethesda, and your room and meals while there, approximately two nights, but ALL tests, labs, doctors exams are FREE, paid for by our taxes
Am so sorry for your pain. Wish I could help more.
Love and health in family ties,
Familial Mediterranean Fever blog - 'my story' w/ FMF, and LOTS of medical documentation, charts etc.
FMF Support mailing list:
Searching SPARKS, HAGER, JAYNE, RAMEY/REMY, COLLINS, MUSICK, WALKER, PORTER
MAYO, CAREY/CARY NAPIER,QUEEN, PERDUE, KELLEY, LETT,
I spoke today with Janine from the United States. We talked about a survey she is implementing in response to the colchicine situation in the United States. I feel this is something we should respond to as a Global FMF Community.
If you are not aware, URL Pharma has received exclusive marketing rights from the FDA to sell colchicine in the United States - which resulted in 4 brands of colchicine being pulled from the US market. Many FMF patients in the US had to stop taking a brand of colchicine that was most effective for them and have not found an alternative that works as well. This development has raised the issue of FMF patients' needs for access to a variety of brands of colchicine. This is a global issue - not just a US issue.
Here is information from Janine's email:
The variability of FMF patients responses to different brands of colchicine has not been documented in medical literature. It is important to document this and report this information to authorities who have regulatory control over our access to different brands of colchicine. This survey requests information on how many brands of colchicine you have taken and how well or how poorly you did on each. Survey responses are anonymous – the survey contains no personal identifiers. Your participation is voluntary. The database containing the responses to the survey is password protected. Please help us to gather as many responses as possible - there is power in numbers. A full report of survey findings will be sent to all respondents.
PLEASE FILL OUT ONE SURVEY FOR EACH MEMBER OF YOUR FAMILY AFFECTED BY FMF (parents respond for children).
PLEASE RESPOND EVEN IF YOU LIVE OUTSIDE THE US – YOUR EXPERIENCE WITH DIFFERENT BRANDS OF COLCHICINE IS JUST AS VALUABLE
PLEASE RESPOND QUICKLY – we have a narrow window of opportunity and should complete this survey in one week. Thank you for your efforts – your response
Any questions can be directed to Janine at: [email protected]
Please fill out the survey here: www.statcrunch.com/5.0/survey.php?surveyid...
Please pass this along to other FMF groups that you may be apart of. All worldwide FMF patients are invited to share their experiences.
The survey is just in English, but please do your best to complete it.
Since your telephone call with Robert Pleticha, Patient Online Communities Coordinator EURORDIS, we relayed on the site rarediseasecommunities.org/fr your email posted on [email protected]
We think that the problem does not come only from the monopoly on the colchicine, but it especially involved the rise in the price of this drug in the US what obliges you to order in Canada.
I recall that in the treatment of the FMF (rare disease), we must take with life of the colchicine what obliges the patients to annually carry out large orders of colchicine.
Not only the catch day labourer of the colchicine slows down occurred of the crises FMF, but it blocks the evolution towards an AMYLOSE AA which as you know it is an orphan disease where only is under development a Canadian drug “KIACTA MC” developed by BELLUSHEALTH.
FMF = Family Mediterranean Fever.
Jean-Pierre TOYRE : Regulator for the European organization of the rare diseases Eurordis, the French community Family Mediterranean Fever (FMF).
Member of the AFFMF: French association of the Family Mediterranean Fever and other Hereditary Recurring Fevers, I am also the regulator of forum MPFMF on Yahoo Groups which is the relay of association in world.
Traduction française-Janine bonjour,
Depuis votre communication téléphonique avec Robert Pleticha, Online Patient Communities Coordinator d’EURORDIS, nous avons relayé sur le site rarediseasecommunities.org/fr votre mail posté sur [email protected]
Nous pensons que le problème ne vient pas seulement du monopole sur la colchicine, mais il a surtout entrainé l’élévation du prix de ce médicament aux USA ce qui vous oblige à commander au Canada.
Je rappel que dans le traitement de la FMF (maladie rare), nous devons prendre à vie de la colchicine ce qui oblige les patients à effectuer annuellement de grosses commandes de colchicine.
Non seulement la prise journalière de la colchicine freine la survenue des crises FMF, mais elle bloque l’évolution vers une AMYLOSE AA qui comme vous le savez est une maladie orpheline où seul est en développement un médicament canadien « KIACTA MC » développé par BELLUSHEALTH.
FMF = Fièvre Méditerranéenne Familiale.
Jean-Pierre TOYRE : Modérateur pour l'organisation européenne des maladies rares Eurordis, de la communauté française Fièvre Méditerranéenne Familiale (FMF).
Membre de l'AFFMF : Association Française de la Fièvre Méditerranéenne Familiale et des autres Fièvres Récurrentes Héréditaires, je suis aussi le modérateur du forum MPFMF sur Yahoo Groups qui est le relais de l'association dans monde.
Thanks! I have some very strong opinions on this - I believe the new "Colcrys" is not working for me, I have had two attacks since switching a month ago (one of which I am having now, 9 days and counting). Before this, I had not had such a severe attack since high school - i.e. since long before I even started colchicine. On generic colchicine, I had attacks every 2-3 months of 3-4 days. Anyone else having this response?
I am Nancy, your English moderator here :-) I have heard this from many folks who have had to change.
I use Odan brand which I order from Canada. While it is not as good for me as Watson brand used to be, I am managing on it. If you would like information on ordering, you can write me at: